Warning over CJD deaths

Doctors are reluctant to test for CJD

An expert has warned that the number of people dying from CJD could be greater than believed because doctors are afraid of carrying out post-mortems following high-profile hospital scandals.

Dr Roland Salmon, from the communicable diseases surveillance centre in Cardiff, said doctors were increasingly reluctant to demand post-mortems.

He was speaking after giving evidence to the Welsh Assembly's health and social services committee.

He said this followed the cases at Bristol and Alder Hey hospitals where thousands of organs were removed from babies' and young children's bodies without their parents' knowledge.

People are more concerned to look after their loved ones' body parts

Dr Roland Salmon

And he said that meant some CJD deaths could be going "half-diagnosed".

"People might die of dementia but we might not know what the cause of that dementia might be - is it Alzheimer's disease or is it CJD?" said Dr Salmon.

He warned cases could be accumulating, particularly among the elderly, and doctors had no way of knowing.

There have been 87 probable or confirmed cases of CJD in the UK to date.

"There has been a general cultural shift," said Dr Salmon.

Conspicuous cases

"People are more concerned to look after their loved ones' body parts."

"I don't think that has been helped by some of the circumstances that have surrounded some very conspicuous cases like Alder Hey and the Bristol heart surgery."

"One of the things that has permeated into my consciousness and I suppose the rest of the public is that somehow these doctors were holding on to bits of our relatives," he said.

"I don't know if that is right or wrong but what that has done is it has made pathologists much, much more anxious in terms of the post-mortems they carry out."

He said people had to realise that post-mortems were not "ghoulish or idle curiosity" but legitimate practice.